title: Parental decisions on children participating in research.
abstract: OBJECTIVE
  To observe and report rates of, and reasons for, parents' refusal to consent to the participation of their children in appropriate clinical research.
  
  
  METHODS
  The parents of children admitted to hospital with a diagnosis of pneumonia or of empyema were asked for informed consent to research involving blood, urine and nasopharyngeal secretion samples from their child. Circumstances and numbers of agreements and refusals were compared and underlying reasons suggested.
  
  
  RESULTS
  Of 144 consent requests, ten were refused, which appeared to be linked to: not wanting the child to undergo further tests, lack of interest in participating in studies, research possibly delaying discharge, and anxiety regarding written consent and the length of information sheets.
  
  
  CONCLUSIONS
  Severity of the child's illness appeared to determine the parent's decision. Involvement and assistance of non-research nursing and medical staff and previous introductions to the researchers are helpful. The timing and setting for the consent process should be selected carefully. Adequate, accessible study information for parents and children contributes to successful recruitment of participants.
authors.affiliation: Great North Children's Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
authors.forename: Mohamed
authors.initials: M
authors.lastname: Elemraid
authors.forename: Kerry
authors.initials: K
authors.lastname: Pollard
authors.forename: Matthew
authors.initials: M
authors.lastname: Thomas
authors.forename: Clare
authors.initials: C
authors.lastname: Simmister
authors.forename: David
authors.initials: D
authors.lastname: Spencer
authors.forename: Stephen
authors.initials: S
authors.lastname: Rushton
authors.forename: Andrew
authors.initials: A
authors.lastname: Gennery
authors.forename: Julia
authors.initials: J
authors.lastname: Clark
mesh_terms: D000328:Adult; D035843:Biomedical Research; D002648:Child; D003657:Decision Making; D004653:Empyema / Q000175:diagnosis / Q000503:physiopathology; D006801:Humans; D007258:Informed Consent; D010290:Parents / Q000523:psychology*; D011014:Pneumonia / Q000175:diagnosis / Q000503:physiopathology